Challenges

Perceptions and recognition of palliative care

Palliative care has developed considerably since its early days when most patients treated were terminally ill and approaching death. But still many people living with HIV/AIDS shy away from the notion of palliative care because they link it with death and many of them don’t want to admit they are dying. Policy-makers, planners and health workers have to tackle this misconception in order to ensure patients with HIV/AIDS receive palliative care.

Many developing and middle-income countries have limited health resources, including drug budgets, and palliative care, particularly medicines used for symptomatic relief, is not always seen as a priority. Governments must appreciate that for humanitarian reasons alone, palliative care - reducing the pain and suffering of those who are chronically ill or dying - should be a priority.

Although HIV has added enormously to the health care burden in many of the poorest countries, many of the drugs and services which can benefit people with HIV are readily available, listed as WHO/UNAIDS essential drugs, and are cheap. If, however, additional resources are not provided to care for the increasing numbers of people with HIV, and to train carers and health workers, many people will die in pain, isolation and distress, and their carers, including many orphaned children, will be left feeling unsupported and helpless.

In some low-prevalence countries, people living with HIV/AIDS are even more isolated because HIV is perceived as a problem of marginalized groups such as injecting drug users, refugees and men who have sex with men. Health services need to structure health care and support to meet the needs of these particular groups, including tackling their isolation and stigmatization.

There are other sound development reasons for ensuring that people living with HIV/AIDS receive treatment to ensure a decent quality of life. Many people who are ill with HIV are intermittently ill and with access to appropriate medicines they have much to contribute to their families and communities. As people with HIV are often young adults, many have young children who need their parents to be with them for as long as possible.

In order to provide effective palliative care, governments and planners may need to transform health services through improved training, by making care available in a wide range of settings and by ensuring a sustained supply of appropriate drugs and medicines.

Organizing training

Even in settings where HIV is a major health problem, most communication about HIV infection has dealt with HIV transmission and prevention, with little emphasis on how to care for people with HIV. Nor do the majority of health professionals know how to holistically assess and control pain.

Palliative care training should be provided for health care workers in hospitals and in the community, for teachers, religious and community leaders; they in turn can teach community health workers, community volunteers and families caring for people living with HIV/AIDS.

General HIV education in the community can be very beneficial in reducing stigma, by helping to change negative attitudes towards people with HIV and their families, and giving factual information about caring for people living with HIV/AIDS.

Making good palliative care services available

In areas of high HIV prevalence the number of people with symptomatic disease requiring medical and psychological support increases as the epidemic matures. For example, in Zambia, which has a population of about 8.5 million, one in five adults are infected and an estimated 90 000 become unwell with HIV each year. In some hospitals in sub-Saharan Africa, 50-70% of adult medical beds are occupied by people with HIV-related illnesses. This has put an impossible burden on already very over-stretched and underfunded health services. Wards and outpatient clinics become overcrowded and medical staff feel demoralized and impotent as they have little treatment to offer. In response to this crisis, two main approaches have been taken in developing countries. First, alternatives to traditional inpatient and outpatient hospital services were sought. Secondly, there has been a development and expansion of services, including home care services, provided by nongovernmental organizations (NGOs).

1. Home care

Many successful models of home care have been developed in different settings. Those that are community-based, rather than developed as outreach from hospitals, tend to be cheaper to run and provide a wider coverage. Using volunteers has not only been successful in keeping costs lower, but has also enabled communities to work together in supporting each other, raising awareness and promoting tolerance and acceptance.

2. Residential hospice care

Residential hospices have been set up in many industrialized countries to help care for people with terminal HIV disease. Hospice care is particularly helpful for people who live alone or who have poor symptom control or symptoms that are difficult to manage, such as those associated with severe brain impairment. Hospice care is also useful for providing respite care, when carers need a break or when patients are being stabilized on new drug regimes. In developing countries there are a few examples of hospices, often run by religious groups. In high-HIV-prevalence developing countries, inpatient hospice care is too expensive to provide for the large numbers of people requiring palliative or terminal care.

3. Day centres

In some countries day care facilities for people living with HIV/AIDS may be available. These enable patients to remain at home whilst allowing carers time off during the day. Patients can receive palliative care at the day centre, counselling and emotional support, cooked meals, services for their children and, in some cases, schemes for income-generation.

Each of the models of care has advantages and disadvantages and patients may benefit from different care at different stages in their illness.

4. Access to analgesics and palliative care drugs

There are often strict legal controls on analgesics such as codeine and other opiates. Because of fears about their misuse, in many countries they can only be prescribed by doctors. In settings where the majority of palliative care is delivered by nursing staff or community carers, and there are few doctors, access to analgesics can be problematic. A balance is needed between increasing access to adequate pain relief for people with HIV and the careful supervision and record keeping of prescription of opiate analgesics.

In some settings cannabis has been found to be helpful in symptom control (particularly for the relief of nausea and improvement of appetite) for people with HIV. However, their use is often restricted by strict legislation. Some PLHA groups argue for these drugs to be made more widely available.

5. Providing support for carers, counsellors and health care workers

Health services need to address the specific causes of stress for people who care for HIV/AIDS patients. Support groups for carers enable them to share their particular anxieties and concerns, such as coping with multiple deaths or coming to terms with the person’s sexual orientation. Caring for people with HIV at the end of their life is emotionally draining and can be depressing. To avoid burnout adequate support for carers, counsellors and health care workers should be available.

In many cultures, parents find it difficult to discuss painful issues with their children. As a result, children are unprepared for the death of their parents, unable to protect themselves from HIV infection in the future and often unable to trust adults. Children with HIV or whose parents or siblings have HIV disease may need culture and age-specific counselling and their parents or carers need support and guidance in talking to children about sensitive and distressing issues.

6. The special needs of children with HIV

Most children with HIV disease in developing countries have little access to medical care, and palliative care or rehabilitation is seldom offered. Assumptions such as ‘because the child does not verbalize his or her problems he/she has none’, or that ‘addressing issues around death and dying will cause more harm than good’ are now being challenged. The importance of communicating with children and involving them in decision-making is now being recognised by parents and health workers.